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Sunday, January 29, 2012

Even though it’s Sunday, there were a few birthday cards in my mailbox when I checked this afternoon. Yes, it’s true that I’ve been sick and the last time I dusted out the box was on the way back from the doctor’s office on Wednesday, but nonetheless, it’s always nice to receive personally addressed mail that isn’t a bill. (Of course, that's not to say that I don't love each and every one of the terrific Facebook birthday greetings that are making my inbox runneth over today. Thanks, everyone!)

One in my snail mail box, though, was a beautifully handmade card (yes, that's it up there at the top of this post) wishing me life’s true gifts—good health, friendship and love. Tucked inside was a small sheet of paper printed with this wonderful, take-it-to-heart message about the why’s and how’s of celebrating birthdays:

Celebrating Life

What is more joyous than birth—a new life coming into the world? It’s an occasion for great celebration. And each year, the day of your birth should be celebrated just as enthusiastically. Others may notice or maybe not. What does it matter? You should be the primary celebrant. After all, you’re the one who has done the work, met the challenges, made the changes, pulled yourself up, taken it on the chin, made peace, pushed open closed doors, taken responsibility, made your life work. You—more than anyone else—have reason to celebrate another year of life! So don’t hold back! Laugh until your belly hurts. Hug you loved ones until they squeal! Jump up and down! Give yourself a well-deserved hoorah! Pat yourself on the back. Then take a deep breath and look to the year ahead with joy and excitement. You’ve earned it!

Sunday, January 22, 2012

I recently created a Google alert for Myriad Genetics and once each day, I get a list of links to news articles, blogs and other information about the company that appears on the web. Needless to say, I’m learning a lot of interesting things about the Salt Lake City-based company that holds patents on the BRCA1 and BRCA2 genes.

If you’re scratching your head thinking “Hmmmm, I wonder how it is that a commercial company can hold a patent on genetic material,” good for you. I’m wondering the same thing, and apparently so is the ACLU.

In the spring of 2009, the ACLU brought a suit against Myriad Genetics, the U.S. Patent and Trademark Office (USPTO) and the University of Utah Research Foundation for patents on “products of nature.” In holding these patents, Myriad limits access to the BRCA1 and BRCA2 genes, not only stifling further scientific advances and compromising quality assurance, but also denying women the option of a second opinion before making difficult, emotionally wrenching decisions about life-changing surgeries. Furthermore, because the company holds a monopoly in the United States on testing for the presence of mutations in the genes that significantly increase women’s lifetime risk of breast and ovarian cancer, the full test costs more than $3,000, a figure that forces many women who might otherwise be tested to forego BRACAnalysis entirely.

Slowly, the case is making its way through the judicial system. In March of 2010, a federal district court judge ruled that patents on “products of nature” are invalid, but this ruling was partially overturned in July 2011 by the U.S. Court of Appeals for the Federal Circuit, which upheld that Myriad’s patents on the genes are valid, but that the methods used to sequence the genes are not. In December of 2011, the ACLU petitioned the Supreme Court to hear what has the potential to be a landmark case.

Better than reading my words about the music, though, watch a few minutes (or the whole megillah) of the Kabbalat Shabbat Song Session to see and hear for yourself. If you’re anything like me, before long, your own toes will be tapping, your hands clapping, your bottom dancing and your voice singing.

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If that’s not enough, plan to tune in at 8 p.m. on Saturday evening, January 14th for live streaming of Miami’s fourth annual Winter Jewish Music Concert. Formerly known as the South Florida Cantorial Concert, this year’s event (which is beyond sold out!) will feature nearly two dozen cantors, soloists and other musicians performing a wide range of cantorial, Ladino, pop, classical, Yiddish, jazz and rap music from the Bertha Abess Sanctuary at Temple Israel of Greater Miami. Martin Bookspan, longtime host of “Live from Lincoln Center” will be the guest host and Dr. Alan Mason will once again serve as the concert’s program director. "The sustained success of this annual concert," says Mason, "is due to the consistently high level of executive each performer brings to his or her selection, and the lack of any intrusion (introductions, thank you's acknowledgements) outside of the music."

For a sampling of last year’s music, check out this video:

To tune into the live streaming of the concert, click on this link at the appointed hour (8 p.m. on Saturday, January 14th).

Happy listening!

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Finally, mark your calendars now for 3 p.m. on Sunday, March 11 when choirs from throughout New Jersey and the west Hudson Valley of New York will come together at Temple Emeth in Teaneck for a choral festival…and a chance for you to hear even more terrific Jewish music of all kinds. Check back soon for additional details.

The last one in particular caught my attention, and I wrote back to Norma:

Hi Norma,

Thanks so much for sending these photos...they are terrific! Is it your grandparents in the third photo...I remember Uncle Morris looking much more like my grandfather than he does in this photo, but perhaps I'm wrong... If it isn't your grandparents in the picture, who are they?

Yes, the Biennial went well, but mostly the staff is just glad that it's over. The Obama speech was a huge success and sitting in the second row of the VIP section is something I will long remember. Now, though, I'm looking forward to a bit of downtime and to getting my life back!

Thanks again for sending these photos. Wishing you all a happy Hanukkah and all good things in 2012. Perhaps we can plan to do dinner again in early 2012.

xoxo,
~ Jane.

The email exchange continued:

Jane,

Actually the adults in the third picture are my grandmother and our great-grandfather. It's possible you are named for him. I vaguely remember him and I was about 5 when he died.

Wishing you a Happy Hannukkah and a Happy New Year!

Love,
Norma

Indeed, I am named for our great grandfather, Jacob Skaletzky, but it may be that I carry more than his name…

Quite by coincidence, I received this email late last week from another “cousin”:

Hello Nina, Sue, Barbara and Jane,

I got your name and email address from the new FORCE Genetic Mutation Database. All of you have the same mutation as me, 6174delT. I am emailing you because I am interested in taking this database one step further and starting to find/ investigate the origins of the mutation. We are all distantly related to one another, so I thought that it would be wonderful if we could try to create a family tree or at least gain additional insight. I can date the mutation in my family back to my great grandmother who was named Sarah Turkinovitch Rubin and was from the town of Pinsk in Poland/ Russia now modern day Belarus. I know that she had the mutation because she died of breast cancer in her early 40's in the 1920s. However, I know very little else about this side of the family and am only starting to put the pieces together. On my other side of the family (my mom's side, the BRCA mutation comes from my dad's side) I helped to create a family tree that is now over 40 pages long and 10 generations, so I have some experience although I had a lot of help and more to go on.

I recently (Dec. 13) underwent a prophylactic double mastectomy and am still in the healing process. It was a really hard decision for me to make that took over four years, but now that it’s done I am glad that I no longer have a cancer cloud looming over my head and am looking forward to seeing my daughter grow up and someday playing with my grandchildren.

I noticed on the database that so far almost everyone who has listed the 6174delT mutation also has listed that they have family who where Jewish from Poland and/or Russia. I would like to know if you know where exactly in Poland/ Russia your ancestors were from? I know from internet research that the city of Pinsk was once 90% Jewish. I wonder if the origins of this gene could have come from this area?

Let me know if any of you are interested in helping with this investigation and if you have any genealogy experience, insight or family trees that might help lend insight.

Wishing you a happy and healthy 2012.

Jessica

Reading Jessica’s email, I was reminded of a phone call my mom had received—perhaps a dozen or so years ago, perhaps longer—from Nancy Jacobs, a complete stranger. She and her family had been visiting Ellis Island from Los Angeles when they saw the plaque there that commemorates my grandparents’ arrival in America. (My mom had purchased it as part of the Ellis Island restoration project spearheaded by Lee Iacocca in the 1980s.) Once back home, Nancy tracked down my parents’ phone number and reached out to my mom.

And so I wrote back to Jessica…

Hi Jessica,

First of all, I hope that your recovery from your recent PBM is going smoothly and that you are feeling well. Many thanks for your note and all the genealogy information you sent. It's exceedingly interesting and prompted me to be in touch with Nancy Jacobs, a family member (by marriage) on my mother's side who has done scads of genealogical research on her husband Bob's family, who hailed from Skalat (my mother's maiden name was Skaletzky as was Bob's mother's) in present day Ukraine. (As I understand it, in shetl times, some days it was in Poland and other days in Russia, depending on who was in charge at the time.) A number of years ago, we provided Nancy with my mom's family tree as we know it, but as far as I know, she hasn't been able to connect it with the part of the tree that includes her husband and his family. However, with such an uncommon name as Skaletzky, we're positive that there is a connection and that we're cousins of one sort or another.

In any event, pasted below is the note that I just sent Nancy (which also will give you a bit of background about my BRCA journey).

Hi Nancy,

You may recall that my parents and I met you a number of years ago (probably more than 10 now), when I was living in Los Angeles and they came out to visit. I've since divorced, moved back to New York and recently have become interested in Skaletzky genealogy for a specific reason. Here's the back story:

A year and a half ago, I lost my mother (Diana Skaletzky Herman, daughter of Julius and Fanny Skaletzky) to an exceedingly virulent and aggressive form of breast cancer that took her life in a matter of weeks. Her sister (Claire Skaletzky Glasser) had previously had breast cancer, but survived. Shortly after my mom died, my sister and I opted to pursue genetic counseling and testing for the BRCA gene mutations common among Ashkenazi Jews. Although my sister tested negative, I tested positive for one of the BRCA2 founder mutations (6174delT) which significantly increases my lifetime risk of both breast and ovarian cancer. Although they don' t know for sure, the geneticists surmise with great certainty that I received the mutation from my mom. I further suspect that my mom received the mutation from her father, who died of prostate cancer, which is how the BRCA mutation often expresses itself in males. (Her mother, my grandmother, lived to be 95 and never had breast or ovarian cancer. She died of plain old age.)

So...all this information is by way of background to ask if you've possibly encountered other Skaletzkys who are positive for a BRCA mutation. Neither my aunt (Claire) nor her two sons (Marc and Ted) have been tested for the mutation and so thus far, I am the only person in my immediate family who is known to have the gene mutation. Of course, I hope that this isn't something that runs wildly in our family, but if my theory is correct, I wouldn't be surprised to learn of others who have faced this issue...and would be interested in being in touch with them. Having watched what happened to my mom and how quickly this disease took her life, I opted for all the prophylactic surgeries during this last year and am feeling well. Most of all, I'm relieved that I don't have to worry about the possibility that either disease will take my life.

I hope that you and your family are well and that you might add my name and email address (jherman0129@gmail.com) to any updates you provide about your Skaletzky genealogy research.

All the best for 2012,
Jane Herman

Jessica, I will, of course, let you know if I hear back from Nancy and would be interested to know, too, if you hear from any of our 6174delT "cousins" who were on your original email. Thanks again for being in touch with such an interesting slant on the BRCA gene...I hope we might be able to uncover some relevant information!